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What You Need to Know About HIV Cure Activism


An Interview With Activist Stephen LeBlanc

By Nelson Vergel

August 8, 2012

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I know it may sound obvious, but why do we need a cure with so many effective HIV medications?

Providing complex, daily, life-long treatment to the 33 plus million HIV-positive people in the world is unsustainable and likely unattainable. Many, many people with HIV, perhaps the majority, do not live lives that allow them to get and take the treatment they needed every day. A cure, even if it were somewhat complex, would be possible to implement for many people who could not reasonably get access to daily treatment for the rest of their lives. Aside from being expensive, and hard to take and acquire according to the necessary schedule, the drugs are somewhat toxic and have unacceptable side effects for many people. A cure will bring hope to people with HIV. A cure will be more effective. A cure is a sustainable end to the AIDS pandemic and in the long run will be cheaper than lifelong daily HIV drugs.

Winstone Zulu died in 2011 in part because he could not get consistent access to treatment. In one of his last writings, he explained: "Without a cure it is death for many of us. I have been on treatment since 1996 and I am currently on one of the most expensive and inaccessible regimens in Zambia. And yet I am still having problems with AIDS. We face perennial stock-outs of anti-retroviral drugs in several towns and cities of Zambia, including Lusaka. It is very clear that under this scenario even the argument that treatment is prevention is not possible. If drugs can run out in the capital city of a country, it is not difficult to imagine the horror in the rural and difficult-to-reach parts of the country."

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If we find a cure, how much do you think it will cost? Will it be affordable to the developing world? How can we ensure that there is access for all when in fact we have limited access to ARVs 31 years into the epidemic?

That is not really possible to say, but costs of various cellular modification and transplant techniques that might lead to a cure have been estimated by scientists and companies doing the research to cost today anywhere from about $40,000 to $100,000. While high, it is extremely cost effective when compared to the price of annual AIDS medications and care in the United States. Cancer chemotherapy, which is another rough model for what some types of possible cures might look like in terms of complexity and duration, has costs often around $5,000 to $30,000 but can range up much higher. So, while it is impossible to say what a cure might cost when we have limited ideas of what a cure will be in the end, with the technologies that today appear most promising or most of interest, an initial cure therapy might cost less than $100,000. In contrast, the lifelong cost of treatment for HIV/AIDS in the U.S. is at least $600,000.

India and Brazil have gene therapy labs and currently conduct gene therapy research in conjunction with U.S. scientists. In the future, these countries could be expected to make some similar cure therapies available much cheaper than in the richest countries.When procedures are scaled up, or automated, even complex cellular cures might be doable for under $25,000.

This is also without considering the enthusiasm in less-developed countries, such as China, India and Brazil, for developing stem cell therapies and cellular therapies in their own countries. These countries could be expected to make similar cure therapies, once demonstrated effective, available much cheaper than in the richest countries.

What can readers do now to help?

Schedule small meetings with your members of Congress (yourself, the head of a local AIDS NGO and an AIDS physician) and educate them about what is going on with the research and the need for more funding. The AIDS Policy Project is calling for $240 million in new money for cure research -- still just a fraction of the money being spent in other areas of AIDS research. Support groups like the AIDS Policy Project that are working to increase cure research funding and spur innovation. Become an AIDS Cure activist. Educate yourself about the different approaches being investigated. Go to our website, www.aidspolicyproject.org, for more information AND to make a financial contribution if at all possible. Like us on Facebook. Read the AIDS Policy Project's report, "AIDS Cure Research for Everyone: A Beginner's Guide to How It's Going and Who's Paying for It."

Stephen, thank you so much for helping us open our eyes to how we all can help move the HIV research agenda forward. There is a lot of work to be done and I hope that people get involved.

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Outsmarting HIV: A Survivor's Perspective

Nelson Vergel is a chemical engineer who has become a leading advocate for sports nutrition, supplementation and the promotion of wellness in the HIV-positive community since his positive diagnosis in 1986. He is also the author of "Testosterone: A Man's Guide" and co-author of the book "Built to Survive"; the founder of the nonprofit organizations Body Positive Wellness Clinic and Program for Wellness Restoration; the Nutrition and Exercise forum expert at TheBody.com; and a bilingual speaker on lipodystrophy, wasting, exercise, nutrition, testosterone replacement, metabolic disorders, HIV medication side effect management and HIV salvage therapy. Nelson also moderates PozHealth, one of the largest HIV health discussion listservs online.


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